Part 1 of 2 (Part2)
by D. J. Fletcher andTom Klaber
Millions of people who are diagnosedwith multiple sclerosis, fibromyalgia, Alzheimer's, chronicfatigue syndrome and other degenerative diseases could haveLyme Disease causing or contributing to their condition.
Forget justabout everything you think you know about Lyme disease.
It is not a rare disease, it is epidemic.It is not just tick-borne; it can also be transmitted byother insects, including fleas, mosquitoes and mites --and by human-to-human contact.
Neither is Lyme usually indicated bya bull's-eye rash; this is found in only a minority of cases.And, except when it is diagnosed at a very early stage,Lyme is rarely cured by a simple course of antibiotics.Finally, Lyme is not just a disease that makes you "tiredand achy" -- it can utterly destroy a person's lifeand ultimately be fatal.
Lyme disease, in fact, might be themost insidious -- and least understood -- infectious diseaseof our day. "If itweren't for AIDS," says Nick Harris, Ph.D.,President of IgeneX, Inc., a research and testing laboratoryin Palo Alto, California, "Lymewould be the number one infectious disease in the UnitedStates and Western Europe."
Lyme disease was first recognized inthe United States in 1975, after a mysterious outbreak ofarthritis near Lyme, Connecticut. It wasn't until 1982 thatthe spirochete that causes Lyme was identified. It was subsequentlynamed Borrelia burgdorferi (Bb), in honor of Willy Burgdorfer,Ph.D., a pioneer researcher.
Many now see the disease, also calledLyme borreliosis, as more than a simple infection, but ratheras a complex illness that can consist of other co-infections,especially of the parasitic pathogens Babesia and Ehrlichia.
Animal studies have shown that in less than a week afterbeing infected, the Lyme spirochete can be deeply embeddedinside tendons, muscles, tissue, the heart and the brain.
"Ofthe more than 5,000children I've treated,240 have been born with thedisease,"says Dr. Jones, who specializes in Pediatric and AdolescentMedicine. "Twelve children who've been breast-fed havesubsequently developed Lyme.
Bb can be transmitted transplacentally,even with in vitro fertilization; I've seen eight childreninfected in this way. People from Asia who come to me withthe classic Lyme rash have been infected by fleas and gnats."
Gregory Bach, D.O., presented a studyon transmission via semen at the American Psychiatric Associationmeeting in November, 2000. He confirmed Bb DNA in semenusing the PCR test (Polymerase Chain Reaction).
Dr. Bach calls Bb "a brother"to the syphilis spirochete because of their genetic similarities.For that reason, when he treats a Lyme patient in a relationship,he often treats the spouse; otherwise, he says, they canjust pass the Bb back and forth, reinfecting each other.
Dr. Tang adds other avenues of infection:"Transmission may also occur via blood transfusionand through the bite of mosquitoes or other insects."Dr. Cowden contends that unpasteurized goat or cow milkcan infect a person with Bb.
What is the reason for the discrepancybetween the government's statistics and the experience offront-line physicians? Says Dr. Jones, "The CDC criteriawas developed only for surveillance; it was never meantfor diagnosis.
Lyme is a clinical diagnosis. The testevidence may be used to support a clinical diagnosis, butit doesn't prove one has Lyme. About 50% of patients I'veseen have been seronegative [blood test negative] for Lymebut meet all the clinical criteria."
Most of the standard tests used to detectLyme are notoriously unreliable. Explains Dr. Harris, "Theinitial thing patients usually get is a Western Blot antibodytest. This test is not positive immediately after Bb exposure,and only 60% or 70% of people ever show antibodies to Bb."
Dr. Cowden favors two tests developedrespectively by Dr. Whitaker and by Lida Mattman, Ph.D.,Director of the Nelson Medical Research Institute in Warren,Michigan. However, bothof these tests have yet to win FDA approval fordiagnostic use.
Explains Dr. Whitaker, "We havedeveloped the Rapid Identification of Bb (RIBb) test. Ahighly purified fluorescent antibody stain specific forBb is used to detect the organism. This test provides resultsin 20 to 30 minutes, a key to getting the right treatmentstarted quickly."
Dr. Mattman's culture test also usesa fluorescent antibody staining technique which allows herto study live cultures under a fluorescent microscope. "Whena person is sick," says Dr. Mattman, "antibodiesget tied up in the tissues, in what is called an immunecomplex, and are not detected in the patient's blood plasma.
So it's not that the antibody isn'tthere or hasn't been produced; it just isn't detectable.Thus, the tests which are based on detecting antibodiesgive false negatives." The tests of Drs. Whitaker andMattman do not look for antibodies but look for the organism,in the same way that tuberculosis is diagnosed.
When Dr. Jones treats a Lyme patientwho's in a relationship, he often treats the spouse as well;otherwise, he says, they can just pass the Bb back and forth,reinfecting each other.
There are several reasons why Lyme isso difficult to test for -- and difficult to treat. Take,for instance, the bull's-eye rash -- called Erythma migrans-- that is supposed to appear after being bitten by a tickcarrying the Lyme spirochete.
Every doctor with whom the authors spokesaid that thisrash appears in only 30% to40% of infected people.Dr. Jones said that fewer than 10% of the infected childrenhe sees exhibit the rash.
A MasterOf Elusiveness
More importantly, Lymecan disseminate throughout the body remarkably rapidly.In its classic spirochete form, the bacteria can contractlike a large muscle and twist to propel itself forward:because of this spring-like action it can actually swimbetter in tissue than in blood.
It can travel through blood vessel wallsand through connective tissue. Animal studies have shownthat in less than a week after being infected, the Lymespirochete can be deeply embedded inside tendons, muscle,the heart and the brain. It invades tissue, replicates anddestroys its host cell as it emerges. Sometimes the cellwall collapses around the bacterium, forming a cloakingdevice, allowing it to evade detection by many tests andby the body's immune system.
The Lyme spirochete (Bb) is pleomorphic,meaning that it can radically change form. The photo onthe left shows a colony of Bb both in spirochete and roundcell wall deficient (CWD) forms.
In the CWD form, the Lyme organism canlack the membrane information necessary for the immune systemand antibiotics to recognize and attack it. Dr. Lida Mattmanstates that cell wall deficient organisms are more properlycalled cell wall divergent.
The Lyme spirochete can not only changefrom the classic spiral into a round form, but can changeback again into a spiral. The middle photo shows this processoccurring in the area shown by the arrow.
But the main reason that Lyme is soresistant to detection and therapy is that it can radicallychange form -- it is pleomorphic. Explains Dr.Whitaker, "We have examined blood samples from over800 patients with clinically diagnosed Lyme disease withthe RiBb test and have rarely seen Bb in anything but acell wall deficient (CWD) form.
The problem is that a CWD organism doesn'thave a fixed exterior membrane presenting information --a target -- that would allow our immune systems or drugsto attack it, or allow most current tests to detect it."
As a CWD organism, says Dr. Mattman,Bb is extremely diverse in its appearance, its activityand its vulnerability. Adds Dr. Cowden, "Because Bbis very pleomorphic, you can't expect any one antibioticto be effective. Also, bacteria share genetic material withone another, so the offspring of the next bug can have anew genetic sequence that can resist the antibiotic."
The doctors the authors interviewedall had their own testing preferences, but each insistedthat Lyme was a clinical diagnosis, only supported by testing-- and retesting.
"We look at the patient's historyand symptoms, genetic tendencies, metabolism, past immunefunction problems or infection," explains Dr. Bock,"as well as history and duration of antibiotic treatment,co-infection, nutritional and micronutritional status andalso psychospiritual factors."
Dr. Tang uses all of the above, butalso analyzes the blood using darkfield microscopy -- althoughshe cautions that not spotting the spirochete doesn't meanthat the patient does not have Lyme disease.
Dr. Cowden also employs muscle testingand electrodermal screening. Dr. Burrascano has developeda weighted list of diagnostic criteria and an exhaustivesymptom checklist.
"In pediatric screening especially,"says Dr. Jones, "we ask about sudden, sometimes subtle,changes in behavior or cognitive function -- such as losingskills or losing the ability to learn new material; notwanting to play or go outside; running a fever; being sensitiveto light or noise.
If one has joint phenomena, we knowthat an inflammatory or infectious process is present. Ahallmark of Lyme is fatigue unrelieved by rest."
For women, Dr. Barkley has found thattesting around the time of menses increasesthe probability of discovering the presence of Bb."Women with Lyme have an exacerbation of their symptomsaround menses," she explains.
"The decline of both estrogen andprogesterone at the end of the menstrual cycle is associatedwith the worsening of the patient's Lyme symptoms."
GovernmentPersecution Of Lyme Disease Doctors
Physicians who treat Lyme disease inways other than the established standard of care -- whichmeans a course of antibiotics lasting no more than 30 days-- risk invasive, exhausting, time-consuming investigationby state licensing agencies, leading to possible loss oftheir right to practice medicine.
Activists report that 50physiciansin Texas, New York, Oregon, Rhode Island, New Jersey, Connecticutand Michigan have been investigated,disciplined and/or stripped of their licenses over the pastthree years because of their approach to healing Lyme disease.
This past November 9th, 500 patientswho got well after their doctors used alternative or complementarymethods joined in a protest rally in New York City. Theyrose to defend Dr. Joseph Burrascano, who has treated anestimated 7,000 cases.
As this story was heading for publication,New York's Office of Professional Medical Misconduct wasengaged in what activists call an unjustified fishing expeditionthat will probably last for months and will allow statebureaucrats to hunt for any irregularity that could be usedto damage Dr. Burrascano.
State medicalboards seem to be trying to protect the medical insuranceindustry rather than patients.
In most cases, effective alternative/complementarytreatments require much more doctor time per patient andoften include a broad range of medicines and supplementsconsumed over a much longer period of time, costing muchmore money than the current standard of care accepted bymedical insurers.
But at the rally, patients angrily rejectedthe medical board's suggestion that their cases demonstratedanything negative about their physician. In fact, they allinsisted, it was Dr. Burrascano whose knowledge, patienceand care finally freed them from the pain and debilitationthat had been ruining the quality of their lives.